ITS NOT FAIR

I have had lots of questions about what lymphedema is....I copied this.

The lymphatic system consists of the tissues and organs that produce and store cells that fight disease and infection. They include the bone marrow, thymus, lymph nodes and spleen, as well as the channels that carry lymph.

Most of us know about the circulation system that pumps blood from the heart to the rest of the body. A significant number of individuals, however, are not aware that the body also has a second circulation system - the lymphatic system.

There is a series of vessels and glands (lymph nodes) that comprise the lymphatic system. They are spread throughout the body, in a similar way to blood vessels.

The lymphatic system has three main functions:

• Fighting infection - the lymphatic system transports a watery, clear fluid full of lymphocytes. Lymphocytes are infection-fighting cells. The white fluid is known as lymph.
  
• Draining excess fluid - after blood has circulated through tissues it leaves fluids and proteins behind; these are waste products. The excess fluid is drained through tiny capillaries and into the lymphatic system. After filtering out bacteria, viruses and other undesirable substances or organisms, the clean fluid is then returned to the blood. This filtering is done by the lymphatic system.
  
• Lipid (fat) absorption - the lymphatic system also absorbs lipids from the intestine and transports them to the blood.

A disruption to the lymphatic system can eventually undermine its ability to drain fluid properly, resulting in excess fluid (swelling) in parts of the body. Patients with lymphoma have a higher risk of infection complications because their lymphocytes cannot reach parts of the body where swelling occurs. Cellulitis, a type of bacterial skin infection, is a common infection for patients with lymphedema.
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Macey at two.

As a MOM of three girls, those three words were spoken several times in the "growing up years"....occasionally when they all get together I still here whispers of them in the wind....I am sure parents everywhere can identify with me.  Sometimes I think my three pugs would utter those three words at me if they could, but they find different ways to tell me "its not fair...."

Yesterday though I found myself listening to those words in my brain circle around most of the day, and into the evening.  I thought about my post today and I want to keep it positive, but then again, those words were the first thing I again thought of this morning.

Many of you --my family here in Blogville ---know yesterday was Macey's visit with her super duper smarter than the average bear Dr. Chen at the UNI of Iowa.  It was the first time I had ever met him, and I could tell he was very smart in his field and I could also tell he was feeling downtrodden when he walked into our room.

Macey didn't really notice because she was to busy talking and planning where we were going to lunch...lol......but her Mom and I did.

Here is a picture of your Lymphatic System.

Macey's picture from the bottom of her left foot to her knee

did not have any blue lines.  We were told Macey has Congenital Lymphedema, which means she was born without lymph glands in the lower part of her leg.  What was upsetting her doctor was because of that fact there would be no reason to do surgery (the one he specializes in) because there is nothing to reconnect and fix.  There is nothing there at all.

That is why her foot looked red after the radioactive dye test, because the dye could not travel up her leg to show area's of damage.

I asked him to repeat himself and explain what he had said at least two times, and then I just sat there rather stunned.  Her momma was much better at understanding this than me, and had prepared herself for this in case it was this type of Lymphedema.  Not me though, I am a fixer, and apparently Dr. Chen is a fixer also, so we were both bummed, and stunned, and angry. 

Not Macey though, she was just trying to figure out what kind of pancakes she was going to share with her sister at I-HOP.

He explained because she is only six and this is a chronic life long disease his goal right now is keeping it at this size, and being able to manage her comfort.  That will include physical theory, massage treatments that later her mom will learn and be able to do at home, and compression garments on her leg.  Ugh.  We will also have to monitor her exercise to see what makes her foot worse, and what helps it.  She is an active 6 year old, this will be fun...lol  He did stress that she always wear some sort of shoes so she does not cut her foot etc. because of negative factors.

The downside is this is a rare disease in children (we were told 19 children in 10 years statistically) so there are few medical personnel that know how to work with a child with this disease.  Yesterday we were told there were only two PT people in Iowa that work with Lymphedema adults, and no one that works with children.  The dr. said because Macey is so young he is hopeful that research will come up with medicine etc. within her lifetime to help control it better etc.

After we got home yesterday Macey's mom called the pharmacy to talk to them about her compression hose, our local pharmacy basically told her they could not help her, and suggested she call another pharmacy further away that deals with breast cancer survivors etc......so she did, the woman at first would not believe that a 6 year old needed this, until Kylei told her she has the prescription for them.  So Macey is going in on Friday to be measured.  It will take approx. 10 days to receive it, and for one hose it is $100.00  She will probably need more than one, cos I know she will be getting them dirty.  She will wear it from the morning time until she goes to bed.  She will probably handle it better than her grandma.  I was trying to think how to pretty them up.  One color, drab tan.  ugh.

Her mom is going to meet with the local dr. and suggest she contact Seattle Children's Hospital since they are one of the few places in the US that actually have a program for children with this disease.  I would think the PT people could contact them also.

The first thing her Momma said when we got back to the car, was that there are much worse things in the world that a child could have.  I agree, I know there are families here struggling with hurting children and adults and my heart goes out to them.  So we are looking for the silver lining, we know there is one, we just haven't found it yet.  We will.

Deb